ArticleAcademic pediatrics
Parent Perspectives in Shared Decision-Making for Children With Medical Complexity.
Article in Academic pediatrics. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT03620071 (Intelligent Information Sharing), which is not on this map. Cited by 20 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Intelligent Information Sharing: Advancing Teamwork in Complex Care
Who cites it
20 citing papers in PubMed, 1 synthesis or guideline pooled it, 55 citations in OpenAlex.
- Parents' experiences of being involved in medical decision-making for their child with a life-limiting condition: A systematic review with narrative synthesis.Palliative medicine · 2024Pooled it
- Shared Decision-Making for Children with Medical Complexity and Their Caregivers in the Perioperative Time.Pediatric clinics of North America · 2026Review
- The health and well-being of children with medical complexity and their parents' when admitted to inpatient care units: A scoping review.Journal of child health care : for professionals working with children in the hospital and community · 2026Article
- Development and acceptability testing of a tracheostomy decision support video for parents.PEC innovation · 2025Article
- Reliability and validity of the Mini-Eating and Drinking Ability Classification System (Mini-EDACS) among Dutch preschoolers with cerebral palsy.Journal of pediatric rehabilitation medicine · 2025Article
- Caregiver Values and Preferences Related to Surgical Decision-Making for Children with Medical Complexity.The Journal of pediatrics · 2025Article
- Article
- Exploring communication preferences and risk thresholds of clinicians and parents of febrile infants under 90 days presenting to the emergency department: a qualitative study.Archives of disease in childhood · 2024Article
- Experiences of Inpatient Healthcare Services Among Children With Medical Complexity and Their Families: A Scoping Review.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- "How long is life worth living for the horse?" A focus group study on how Austrian equine stakeholders assess quality of life for chronically ill or old horses.BMC veterinary research · 2024Article
- Parental impact during and after neonatal intensive care admission.Seminars in perinatology · 2024Review
- Free Online Decision Tools to Support Parents Making Decisions About Their Children's Chronic Health Condition: An Environmental Scan.Academic pediatrics · 2023Review
- Shared decision-making for children with medical complexity in community health services: a scoping review.BMJ paediatrics open · 2023Article
- Self-care in children and young people with complex chronic conditions: a qualitative study using Emotional Text Mining.Frontiers in pediatrics · 2023Article
- Barriers and Facilitators to the Implementation of Family-Centered Technology in Complex Care: Feasibility Study.Journal of medical Internet research · 2022Article
- Decision-making for Parents of Children With Medical Complexities: Activity Theory Analysis.Journal of participatory medicine · 2022Article
- Divergence in Perceptions of Shared Decision Making in Pediatric Neuromuscular Scoliosis.MDM policy & practiceArticle
- Pediatric Caregiver Version of the Shared Decision Making Process Scale: Validity and Reliability for ADHD Treatment Decisions.Academic pediatricsArticle
- Challenges and coping between parents in shared decision-making for children with complex, life-threatening conditions: A qualitative content analysis.Journal of pediatric nursingArticle
- Using a Constructivist-Oriented Modified Grounded Theory Approach in the Study of Intrafamily Trauma Communication Process in War-Affected Families: A Methodologic Example.ANS. Advances in nursing scienceArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
11 authors at 5 institutions in 3 countries.
Funding
Abstract
objectiveShared decision-making (SDM) may improve outcomes for children with medical complexity (CMC). CMC have lower rates of SDM than other children, but little is known about how to improve SDM for CMC. The objective of this study is to describe parent perspectives of SDM for CMC and identify opportunities to improve elements of SDM specific to this vulnerable population.
methodsInterviews with parents of CMC explored SDM preferences and experiences. Eligible parents were ≥18 years old, English- or Spanish-speaking, with a CMC <12 years old. Interviews were recorded, transcribed, and analyzed by independent coders for shared themes using modified grounded theory. Codes were developed using an iterative process, beginning with open-coding of a subset of transcripts followed by discussion with all team members, and distillation into preliminary codes. Subsequent coding reviews were conducted until no new themes emerged and existing themes were fully explored.
resultsWe conducted interviews with 32 parents (27 in English, mean parent age 34 years, standard deviation = 7; mean child age 4 years, standard deviation = 4; 50% with household income <$50,000, 47% with low health literacy) in inpatient and outpatient settings. Three categories of themes emerged: participant, knowledge, and context. Key opportunities to improve SDM included: providing a shared decision timeline, purposefully integrating patient preferences and values, and addressing uncertainty in decisions.
conclusionOur results provide insight into parent experiences with SDM for CMC. We identified unique opportunities to improve SDM for CMC that will inform future research and interventions to improve SDM for CMC.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.